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#1
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There are many here that suffer psychotic disorders , but none that have reached the diagnosis of sz and have fully recovered. I spend my time trawling forums to find evidence of high functioning sz. And its just not their. There are many that see themselves as having potentialy met the diagnostic criteria but have not being officially diagnosed by the pdocs.
I would like psychcentral to cast the net wide and bring recovered sz into q and a forums here and into other forums. And let them speak frankly as to how they recovered. There seems to be misinformation from psychiatry as to the power of meds to direct recovery and there also is inaccuracies with the antipychiatry movement in how they represent their dx. For example Paris Williams a well known polemic on the drug free recovery model for sz says he is a recovered sz. Yet his recovery was complete in 2 years , drug free, psychiatry free , where after he went on to get a phd in clinical psychology. Underachieving for a sz ? Misrepresentation of Dx? Not many I know , could complete a degree , masters and phd without incredible mental clarity , all this post psychotic break. So what's afoot? On psychiatry's side we here of meds being the route to work, family and a normal life. Yet in trials the subset who actually 'respond' to meds is better than placebo but not of striking margins. And of this subset of responders only a further subset is deemed recovered. From forum to forum I read of people taking antipsychotic meds , yet they are still insufficient to allow them to work or integrate fully with society. And the antipsychiatry movement seems to be full of cognitive agile and robust people sporting degrees , doctrates etc. Something not quite right I would say. So where is it all at , i'd like to see a credible organisation investigate this further. Sent from my KFSOWI using Tapatalk Last edited by Anonymous52334; Feb 13, 2014 at 10:23 AM. |
![]() punkybrewster6k, Sometimes psychotic, Zaria
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#2
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You know the figure I see thrown about is 25% recovery but my understanding is that includes people with schizophreniform because the two are hard to separate, but also even e fuller Torrey says that you can treat that 25% with yellow jelly beans and they will get better. I'm not sure anyone is saying the meds are a cure....I think the consensus is they are a bandaid to wear while your brain heals itself and they may stop you from getting worse I mean if they block new delusions that's one less pathway getting wired into your brain that you'll have to fix. It's sort of like pain meds....they don't actually stop the source of the pain just the symptoms. Same with cold meds or a lot of drugs we use, just because they don't cure the disease doesn't mean you have to suffer the symptoms. I haven't seen any data at all suggesting the meds cure anything if fact there is more evidence to support the belief that they may hinder the process. Wunderinks study for one but also WHO data on people in 3rd world countries having a better chance of recovery than those in industrialized nations. Anyway you know I never had the full sz diagnosis but it was never ruled out either. But I agree with you I would love to hear from these people if they exist...I know Mark Vonnegut is a good example of one who had full sz recovered and then had one break later in life..he thought he was Jesus and then went on to become a doctor with Harvard med, he has some revisionist history though and rediagnosed himself as bipolar despite an official sz dx early on. Who know which it is he clearly had prolonged psychosis in the early book. John Nash for sure as well.
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#3
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Also let me ask something that might clarify what you actually want---what defines sz for you? It is a strict DSM 5 definition? I know the guys I mentioned above were more like the DSM III definition just due to age so its kind of tricky since the dx itself is nonspecific. What about the fact that any two pdocs can see the same person and come up with a different dx, I've seen people here with sz, bipola,r sza ,autism, psychotic depression etc because you can't get a single set dx unless you only ever ask one pdoc. What about the ICD-10? This is an internationally accepted resource and it only requires 1 month of symptoms for a sz diagnosis---I would qualify for that for sure. Even the DSM actually only requires a month of hallucinations with the remainder of 6 months with some level of functional impairment but that seems arbitrary to me considering my functionality was never measured---I mean I have an IQ drop of 10-20 points is that impairment enough? So I had enough active psychosis to have sz under any definition are you looking to recover from psychosis or from the functional element? Also are you looking for people who hear voices---Elyn Saks has recovered from a strict DSM definition of sz but so far as I can tell she was mostly disorganized and wasn't hearing voices or at least doesn't mention voices, she's also a big proponent of staying on the meds as she relapsed when she tried to get off and her dose was above the guidelines for administration. So lets just talk theoretically---the common cold which we think of as one type of disease is actually 200 different diseases---this is one of the reasons why there is no cure but only treatment of symptoms...can you imagine getting 200 different vaccines just to stop yourself from ever getting a cold? I know you prefer to think of sz as one thing but what if its not one thing? What if its like the cold. I could make a vaccine that would prevent one cold virus but if you were exposed to another type it would do you no good.
Another point----cures, remission all that is complex as heck and any person you talk to is just an n of 1. So for me my final end to the voices was reading a book called drawing on the right side of the brain and working through the exercises---but I also had meds and cbt. Did any of that actually cause my cure? This is like asking someone how they got over a cold. They are likely to say rest and chicken soup and cold meds----not one of those are why they were cured....their T cells and B cells and innate immune system got together and wreaked havoc until the virus was gone. How would I know what my brain was actually doing when I was getting better any more than you know what your brain was doing when you got sick? So what are you actually looking for? Your personal cure or somebody elses story? One of the most amazing stories I've ever heard comes from someone who doesn't have sz at all---she had learning disabilities---and from that nobody ever thought there was a cure but she was just curious and in her reading she came across the concept of neuroplasticity and she used it to fix her own learning disability and she now does this for other students every day. What was amazing about her was she was having difficulty learning to read clocks but once she fixed that it actually opened up a general understanding of philosophy---it was too abstract for her prior to that she just didn't get it---but she actually changed on a core level how her brain worked. I think that's incredible and she did this before scientists or doctors thought it could be applied or learned, instead the prevailing theory was simply that you could learn techniques to deal with the fact that your brain wasn't working only compensations. She actually had poor physical control of half her body and fixed that too---she just fixed everything she didn't like by doing various types of exercises. Her name is Barbara Arrowsmith Young and she was my inspiration to come up with a regimen to fix myself. You might want to check out her book, its pretty awesome. Barbara Arrowsmith Young | | Barbara Arrowsmith Young
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#4
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I know I'm a weird case and I don't carry a dx of schizophrenia. And I have some issues now that are due to bipolar and maybe other things. I don't really carry a full diagnosis. My technical diagnosis is bipolar NOS with possible psychotic features, because all I have is a story of something that happened to me that isn't happening now and no means to get back into a pdoc regularly.
But.... If I had gone in to a pdoc at the time, I wonder if I would have a dx of schizophrenia or schizoaffective. Because my delusion lasted at least 5 years, but possibly longer up to 7 years at the longest. It drove me to do things like call the police because I thought people were sneaking around my yard at night. I would tell anyone who would listen. I wasn't isolating, and I was functioning well enough. I had good grades in school, but I was only taking 3 classes per semester and one was usually an art class or theatre class. I couldn't hold a job and I never got my associates degree from community college. I went to college from 18 until I was 21, when I dropped out mid-semester for no reason at all. In that time I tried 5 different jobs. The longest job I held was 6 months, the shortest was 3 weeks. My self-care was fine at that time in terms of being showered and dressed and even wearing a little bit of make-up. But, I was still disorganized in general. My room was always a mess. My backpack was a mess. I don't know, it's a big giant "maybe" but maybe not. But, the real question I have is what made that delusion stop? What happened? It was locked up in my brain suddenly or faded? I don't know. But I completely forgot about it until that fateful day when I happened to drive passed the building that triggered it to begin with. And when that happened, why did I suddenly realize it had all been something unreal? I can't say I'm a recovered high functioning schizophrenic. But I can say I had something very major happen to me that effected my whole life in my late teens and early 20s and something that wasn't treatment or meds made it stop. In fact, 0 awareness that anything different or unusual going on with my thoughts or behavior. Any pranoia I have now is minimal in comparison to what I experienced back then by comparison. I have so many questions. Will it come back? Was it just a weird phenomenon? I will never have answers, I've decided.
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![]() Sometimes psychotic, Zaria
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#5
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The person has transient positive symptoms exceeding 6months. The person can no longer function practically or convincingly without intervention. I assume that the people who get better without med intervention were less effected by the disorder and had less severe symptoms. Is that fair? |
#6
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My 2 guesses on why it stopped are:
1) I suffered horrible trauma when I lost custody of my son (who was then 3 years old) and I didn't see him for a year. This trauma outweighed whatever else I was going through at the time. 2) I was removed from the area effected by the trigger. It could be a combination of those two things. These days I may not have delusions but I have much lower self-care, although not severly bad, my cognitive function is lower for sure but not so far gone that I can still "fake it" to a degree. My episodes of mixed states and cycling in my bipolar is far more sever than it was back then, too. But, I'm resilient and I refuse to give up to these problems. I get that drive from my mom.
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#7
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Hi sometimes ,
In terms of looking at this , i essentially ask 'who with a dx of sz' and i draw my conclusions on this. Now that could of course throw up the old add-age that people who respond in kind are tied to the medical model which presume a certain negative course , ala the disease model . I am not convinced though If someone terms themselves 'schizophrenic' and are willing to talk about their experiences i have found an overwhelming negative course. The vast majority are not functioning as they would like. So is labelling a contributory factor in prognosis? No i don't think so. Instead of using rambling logic about learned helplessness why cant we say it simply that the people who were never 'schizophrenic' did not have flagging symptoms that put them on a trajectory to schiz diagnosis. Last edited by Anonymous52334; Feb 13, 2014 at 01:59 PM. |
#8
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My transient positive symptoms lasted about a year and a half but they were infrequent and seemed to be based on stress. After the initial 3 months on risperidone I had no more than 2 hallucinations in any given month though. This actually put me below the SIPS/SOPS rating they use for dxing kids in their prodrome so they just didn't count it as enough for any sort of sz dx. I was at an academic center so they are less likely to want to give you a sz diagnosis. My psychologist went with schizophreniform for me and my pdoc never told me anything other than psychosis but he said he didn't know if I had sz because he would have to take me off the meds to find out and that was unethical. Also I had 2 hallucinations coming off the meds and that's 2.5 years out but I hadn't had any at all in the year before that. So its not that I don't have hallucinations ever they are just way down as they never stopped when I was sick---it was constant voices---also had hallucinations with every sense, smell touch taste... I was on risperidone or abilify for the whole period of 2.5 years after the first 1.5 months. Now was I functional during those 1.5 months? Well I kept showing up at work but I don't have a lot of supervision so the fact that I would randomly take a train downtown during the day to try and escape the voice transmitters by random walking wasn't really noticed. I mean basically I am the supervisor so who is going to rat me out you know. A couple of times I thought I was terribly ill(because the voices told me I was or due to hallucinations of pain) so I skipped work and went to the ER, one of those times was what got my coworkers to take me to the pdoc the first time. I also just walked out of the restaurant without eating one time I was out with my friends from work for lunch---I just walked out and went home and never went back to work that day. Any other job I would have been fired for sure. I started getting weird ideas about the experiments I had done in the past so I repeated them rather than doing the new work I was supposed to be doing. I stopped being able to remember if I had done a step in an experiment or not even though I had just done it so I had to write down everything I was doing as I was doing it. So things had pretty much gotten to the point where I wasn't functioning well at all but people had no idea until I told the police I had been raped by a former coworker---this guy was in Boston several states away and had just gotten engaged. One of my friends had even talked to him the night before---this made no sense to anyone and that's how I finally got caught and put on meds. So for me meds were critical but they worked right away as in within the week 98% of the voices were gone---then I got cbt and that helped me develop my own techniques to get rid of the rest. I tried getting off the meds after a year but it didn't work out at all I could not stand the way I felt at all after only 2 weeks on a reduced dose...was I going to relapse...didn't want to take the chance went back on. Honestly I think without the meds I would have died...I mean I almost gave my entire life savings to the food bank, I wanted to break out all my teeth to get out the supposed transmitter. I wanted to rip up my home to find the cameras and recorders. I was supposed to crush my bird who would be reborn as a mini-dragon who would filter the voices for me. Wanted to kill this dude at Harvard. So basically I was sick enough that eventually I could have done something irreversible and the only question was whether that first encounter was going to be with doctors or cops. It was a downhill slide that was only getting worse till I got the meds. But here is the thing if you're on meds before the first 6 months are up and they fully control your symptoms how will you ever know if you have sz or not----that is why my pdoc never gave me a dx---he really didn't know and neither do I. He did say I was high functioning though which is why I didn't actually do those horrible things... Are the people who recover without meds milder...I don't think Nash was mild he had a lot of intervention ECT/meds etc but my understanding is he didn't recover until off the meds. I know that Vonnegut had meds initially at least but he never mentions whether or when he went off them. Sacks is still on meds. Personally I think you would have to be masochistic to try this without the meds once you realize you're sick (which I had no idea of while sick). I mean even for a cold you don't have to take a decongestant but why wouldn't you---I mean why feel sick if you don't need to? So I'm 3 months off the meds so far and I see it as experimental for at least the first year. Still hoping for the best. I'm still not sure I meet your criteria for a dx of sz because the meds were so effective and I have no idea if I will relapse in the future (there is a roughly 5 year period of higher risk after an initial break). If you want to ask me anything I'm open to questions though---oh and in that 2.5 year period of meds I was absolutely rigid---I missed one pill once and that is it out of what a 1,000. Still I don't think the meds cured me but blocked my symptoms until I could get better on my own but then I have no way of knowing, anything could be true. That was kind of why I asked what you actually want to know because like I said the concept that I would know how I got better is at this point as as unintelligible as the idea that I would understand why I got sick in the first place...
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#9
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#10
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I actually want to point out that my trajectory may have actually been more severe than a lot of people who actually have a sz diagnosis because my hallucinations did not stop at all ever without meds. I mean a lot of people just have intermittent hallucinations they can deal with for 6 months or longer before they even meet a pdoc and no one even notices they are sick. That's why they get a sz diagnosis because they met it before treatment even began. In my case its more like the freaking flood waters broke and I was completely sick overnight so what I'm wondering is if what you are detecting here is actually the difference between acute and insidious onset. People who have a sz diagnosis may just be more likely to have an insidious rather than an acute onset and acute onset is a known good prognostic indicator. In fact there is another category in the ICD-10 called acute and transient psychotic disorders that more or less is defined by acute onset and rapid recovery----this doesn't really exist in the DSM except for brief psychotic disorder but that is less than 1 month psychosis. ATPD lets you have 3 months to recover and it's defined by a less than 48 hour onset so its what I tend to associate with most but I only found out about it recently since its not in the DSM and the individual names of the diseases in it are completely variable around the world. So that is partially why I had you define sz for me I wanted to make sure we were on the same page. Personally I think the dxes are just trends anyway---current (new)pdoc was talking about brief psychotic disorder even though I don't meet the criteria for that because I was psychotic too long because she considers the DSM a rough guide and now that she can see that I got better and am off meds she's leaning toward that because it makes more sense now considering my outcome but she never saw me when I was sick. To me the whole point of having a dx is to determine outcome but you know whatever as long as I stay well.
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#11
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What about Elyn Saks? What about John Nash? There are successful schizophrenics out there.
The people who come to PC are mostly people still in the danger zone, not fully recovered people. Though I'm not sure whether one can be "fully" recovered. Schizophrenia is like cancer. You can go into remission, but you never know if and when the illness will strike again. You kind of have to learn to live with it, with the possibility of relapse always there. I'm also sure that many people in the real world hide or lie about their diagnoses because of the stigma. I know I don't tell people I'm schizo or psychotic. (diagnosed schizoaffective, we're not sure whether it's depressed type or bipolar type) Plus, schizophrenia is an illness that typically hits in young adulthood. It's not like autism where little kids are affected. People don't care about adults. They are less able (or willing) to help them.
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#12
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Its certainly seems like alot of work to get yourself back and functioning. I must confess that i take my views because of my experiences, mind and body. When sz first break came it came in an organic manner with complex symptoms. My food had a metalic taste , i was queasy and sick , dry reaching , i had tactile , visceral , visual , gustatory and olfactory hallucinations , i had symptoms mirroring epilepsy. I developed physical problems; persistent sexual arousal disorder and urinary frequency. So i went mad for a while. But as it settled i noticed how organic my symptoms were. I read up on brain irregularities and i found my symptoms had overlap with many organic disorders. Eventually i came to the conclusion that my brain was in biological chaos.
Congrats on your success and wish you some more |
#13
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Its certainly seems like alot of work to get yourself back and functioning. I must confess that i take my views because of my experiences, mind and body. When sz first break came it came in an organic manner with complex symptoms. My food had a metalic taste , i was queasy and sick , dry reaching , i had tactile , visceral , visual , gustatory and olfactory hallucinations , i had symptoms mirroring epilepsy. I developed physical problems; persistent sexual arousal disorder and urinary frequency. So i went mad for a while. But as it settled i noticed how organic my symptoms were. I read up on brain irregularities and i found my symptoms had overlap with many organic disorders. Eventually i came to the conclusion that my brain was in biological chaos.
Congrats on your success and wish you some more |
#14
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![]() And yes its a ton of work----and I can say this compared to other illnesses it truly is the worst...when I was 12 I lost the ability to walk(cerebellum damage)...while that sounds terrible I recovered from that in a few months over one summer and my biggest inconvenience was needing someone to help me move to the bathroom or wherever when I needed to go ----had to have surgery because my ovary was ruptured---extreme pain but it got better right after surgery---had reactive arthritis---months of chronic pain---none of these even remotely holds a candle to what I experienced with psychiatry and psychosis not even remotely, its something beyond a marathon but then you know that because you're living it...so I wish you luck and success on your journey as well. ![]()
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#15
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Sometimes, I think it's absolutely true that you won't find your mirror image in anything. The best gauge of progress is yourself. How are you now vs. when you were first diagnosed. Don't forget to list the positive strides you make when you start feeling overwhelmed by other things that you're still working to overcome. Small victories are still victories.
I think it's a good message for anyone.
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#16
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So I believe so much can be garnered from a recovered 'schizophrenic' Sent from my KFSOWI using Tapatalk |
#17
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These are good... late age of onset acute onset female good insight caretaker in the home(this one I did not have) good premorbid functioning (ie having friends and education level---the more the better) brain to spare(if you lose 20 iq points does it matter---it doesn't if you start with 150 it does if you start with 100) These are the ones they told me off the top of my head I'm sure there are more...
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#18
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John nash's story is one that I take interest to. To the best of my knowledge john had received his education and had done his work on game theory , at least the work he got the nobel for, prior to his psychotic break. John is treated as royalty at the university because of his ground breaking work but also because it adds to the mystique and culture at the university. He is treated as a free spirit and spurned genius lets face it , is sexy. That is not to say his story is still not remarkable. Elyn Saks takes clozapine , a drug that is very good for psychotic symptoms but has a troubling side effects profile.5% of psychotic patients are prescribed it. I am not here to run down sz sufferers but I think it unusual that psychiatry and antipsychiatry makes claims that don't seem accurate to me. Psychiatry seem to be exaggerating the benefits of the drugs and proponents of med free recovery seem to have a cognitive base that are not consistent with the cognitive deficits of the disorder. Sent from my KFSOWI using Tapatalk |
#19
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psychiatry exaggerates the drugs to get big pharma to sell them.
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#20
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So my understanding of the 25% recovery rate is something like this...either you never get the sz diagnosis percent unknown because szp is included in that 25% for some reason so cut some of that percentage but there are also relapses and remissions where the percent is just the percent who are "cured" at any given time...it doesn't mean any person is ever fully cured I couldn't find any evidence that they ever verified it was the same people who were staying well. Also psychiatrists count people still on the meds as cured so long as they aren't experiencing symptoms above a certain threshold.
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#21
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On the recovery rate , I would like to see a proper investigation into this , hence the point of the op and this discussion. Sent from my KFSOWI using Tapatalk |
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#22
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Just like chemotherapy has negative effects on the body, so do some psych meds. It's about choosing the lesser of two evils.
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#23
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OK I'm just trying to clarify what it is you're looking for it looked like you were discounting elyn saks because she is on meds but most recovered people with sz are on meds at least in the first hand accounts I've read...John Nash really is an exception but there is also Johanna greenburg who recovered with only psychoanalysis and basic sleep meds...chloral hydrate that was used on every patient in the ward at that time. I mean the whole experiment on recovery without the meds was done before the meds existed and basically once people got a sz dx it was considered life long it's only recently that anyone was thought to recover once they got that dx. As far as the follow up studies there are only a handful like ten at most at least in English and most of those were done at a single end point and they would ask for example have you had any symptoms in the last year or whatever length of time they chose for each study. The only one I know that actually follows the same people over multiple time points is the harrow study but they never show data on individuals over the 20 year course it's all pooled. So I guess what I'm saying is I think the actual rate of full life long recovery is pretty small much smaller than the 25% we are told. What I meant about the Nash thing is you're talking one in a million with people like that where they just spontaneously get better I'm just not sure you'll ever find an equivalent person on PC...I mean there are really only 10 or 20 people who actively talk on the s and p forum at any given time.
Also more prognostic indicators... More mood symptoms are better(ie closer to bipolar is best sza middle, sz worst outcome) Short duration of untreated psychosis but this is really new and I'm not convinced its a different factor than acute onset.
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#24
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OK so I looked at the harrow study again it's not quite as bad as I remembered...the follow up every 2.5 years until they hit ten years then it's every 5 years but they only ask about hallucinations in the year of the follow up study so there is data missing. Overall by year 20 33% of people with sz had no hallucinations at each of the previous follow up points which means they are following the same people in this one study of 51 people with sz but they could still be missing intermittent relapses not at the study years. So it actually looks better than I thought somewhere around half of people were off meds at this point. So if you want to know where these people are, well they are all in Chicago or they were at the study initiation they were treated at UIC which is the same place I was treated...they are very cutting edge there so some of this could actually be better care... but numbers around 25% are pretty consistent However these studies are pretty small size in general.
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#25
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The problem with looking at studies on schizophrenia in the past or the history of schizophrenia is that for a long time, EVERYTHING was seen as schizophrenia. Bipolar with psychotic features? Schizophrenia. Dissociative identity disorder (multiple personalities)? Schizophrenia. PTSD? Schizophrenia. Autism? Childhood schizophrenia.
So it's hard to find examples of people who have recovered from schizophrenia because it takes time, and we're just figuring out what schizophrenia really is... Hell, the only other schizophrenic I knew in real life went back to the hospital recently and was diagnosed as bipolar...
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